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Ah, reality shows. The Daisy reality show would never be reality; my life is actually rather dull, and I mean that in the best of ways. One of the shows in the Big Family category has caught my attention, and here’s why it did.

Outdaughtered features the Busby family, a couple with six daughters. One girl just turned six years old, and the other five little ones just turned two. You read that right, readers: quintuplets. The only all-girl set of quintuplets to be born in the U.S.

Many scenes feature Danielle, a.k.a. Mom Busby, sitting on the playroom floor surrounded by the toddlers. I remember working in child care, spending hours on the floor surrounded by preschoolers or toddlers. I handled that for six to eight hours, and I can only imagine the Busby family handling their little ones 24/7/365. Danielle earns my respect for being a stay-at-home mom to six little one, five in diapers.

Adam, a.k.a. Dad Busby, is dealing with a mental health problem; he has a major depression going on. I understand how that can feel; the worst depression of my life took place about seven years ago. I made some difficult decisions during that time such as blogging my progress, sharing (or not sharing) my diagnosis with coworkers, and much later, deciding to put my real name to a very public essay on depression. I admire Adam’s courage in allowing his depression to be seen on their television show. By publicly owning his illness, he risks criticism from people he doesn’t even know. By publicly admitting he needs help, he risks being seen as weak. But on the positive side, by publicly owning his depression, Adam Busby lets others, especially other men, know that they can seek help. They don’t need to suffer alone or tough it out. Adam earns my respect by facing his depression, and by doing it in a way that may – no, WILL – help others.

Now to the third reason I follow the Busby family’s adventures in reality television. Hazel, little Hazel Grace, is the reason. Hazel was the smallest quint at birth. She developed more slowly and reached milestones such as walking later than her sisters. Hazel also has a vision problem. Her diagnosis thus far is not the same as my Amigo’s blindness, Leber’s Congenital Amaurosis (LCA), but we went through a journey much like Adam and Danielle’s when Amigo was a baby. Hazel is adorable and lovable, like many tots. Every time I see her squint and every time I watch an episode at the eye doctor’s office, it takes me back. 25 years ago feels like yesterday.

And that, dear readers, is why I record Outdaughtered on Tuesday nights.

And that, my friends, is also why I’m worried about a family in Houston that I don’t even know. I hope the Busbys and their extended family in Texas and Louisiana are safe and healthy in the midst of Hurricane Harvey.

Without access to health care, I might indeed have died or become severely incapacitated a few years ago. Thanks to health insurance through my employer, I was able to see the doctors I needed, get my stroke diagnosed, and then go to physical therapy and slowly but surely teach my left side to communicate with my brain. Ironic, I know. I lean left figuratively, politically, so leaning left literally – hey, why not?

The stroke was only one item in a long list of illnesses and near-catastrophes. Had I not been covered through my job, I’d either be bankrupted by medical bills or – gone. Done. Deceased.

The vote on the Senate floor Tuesday afternoon allows the bill that would repeal the Affordable Care Act to be discussed, debated, amended, and eventually, it could be voted into law. Make no mistake, my friends, repealing the ACA will be catastrophic.

It’s time for us, the voters, to learn exactly what’s in this bill and how it will affect each and every one of us. Pre-existing conditions, maternity care, disabilities, mental illness, vaccinations, birth control, and more: learn what they mean and why these pieces matter in the puzzle as a whole.

It’s time for us, the voters, to pay even closer attention to our elected officials. What are they saying? What are they doing? And how do their actions affect us? And then we need to let those elected officials know that we’re watching, and what they do matters. Their votes on this bill will affect people nationwide.

For me, it’s time to get out the postcards again. I plan to remind my senators that being able to see a doctor is not an abstract concept. Without insurance, without access to medical professionals, people will die. Health care, indeed, is personal.

Voting Yes on the American Health Care Act and then following your vote with a statement that included, “This legislation is far from perfect and I look forward to continuing the process of improving the bill as it makes its way through the U.S. Senate” does not give you a pass on accountability. Nice try, but not good enough.

Sincerely put off by the vote,

Daisy

Dear Speaker of the House Ryan;

I fail to understand the celebration after passing the American Health Care Act by only three votes. Were you celebrating a skin-of-your-teeth win? Or were you cheering for the Senate to take over and consequently take the blame for the resulting badly written legislation? Oh, by the way, did you even read the bill?

I was surprised you didn’t respond professionally when asked your position on the recently passed Health Care Act. After all, you mentioned earlier that day that you were looking forward to sticking it to people with pre-existing conditions, er, I mean taking advantage of parts of the law that would allow you to waive essential care requirements.

Here are nine people who will lose their coverage under Trumpcare and one who won’t:
1. a diabetic
2. a cancer survivor
3. an asthmatic
4. someone with allergies
5. a heart disease patient
6. an HIV/AIDS patient
7. someone with chronic lung disease
8. someone with Cystic Fibrosis
9. someone with Multiple Sclerosis
10. any member of Congress
List by:
Dr Cathleen Greenberg
Oregon Health & Science University
Residency Family Medicine
Yale University School of Medicine

I kept hoping it wasn’t true, wasn’t that bad, so I called on my closest tool: the Internet. I searched for a reliable source (no alternative facts or fake news would do) and found the following.

In summary, the decision will be left up to the states whether to maintain two parts of the Affordable Care Act (a.k.a. ObamaCare). The first: the requirement to cover Essential Health Benefits, including but not limited to maternity care, birth control, and emergency room visits. The second is the part widely feared. The replacement for the Affordable Care Act would let states decide whether or not to keep the Community Rating Rules, the piece that insists coverage be available to all. All, that is, regardless of their zip code, gender, pre-existing conditions, and more.

Some states will weather this storm. Those (Minnesota, I’m looking at you) accepted federal funds to establish their health care exchanges. They set up a system that worked for their people, and they’re in a good place to continue covering state residents.

Mine? Under the questionable leadership of Scott Walker, a man who turned down federal funds for anything he could, a man who seemed to fear cooties from any funds that were generated thanks to President Obama, I fear my good state of Wisconsin will go with the GOP flow and let those two pieces of the AFA lapse.

We citizens with preexisting conditions will not be cut outright, but we’re likely to see our premiums go sky high to the point where we can no longer afford health insurance. And that, my friends, is scary.

What can we do about it? We can lobby. Call, write, email, call, write, and email our legislators. Give them these two points:

It is not equitable for Congress to exempt themselves from the tough results of their own lawmaking.

Forcing people to pay extreme premiums to get the treatment they need is wrong. Simply put, wrong.

It’s April, again. Autism Awareness Month. What are the numbers now? A few years ago, autism occurrences were estimated at 1 in 88. That’s looking almost common, rather than unusual.

Well, folks, it’s time we start learning about each other, neurotypical or on the autism spectrum. Even under the old numbers of 1 in 166, the estimates indicated so many children and adults with autism that “normal” needed redefinition.

Awareness, people, is not enough. Awareness is a low form of knowledge, and knowledge itself sits down low at the base of the learning pyramid. Awareness means knowing that the student sitting next to your child in class might have autism. Knowledge and understanding come around when that child responds to gestures of friendship, perhaps awkwardly, yet making a step toward joining the social peer group in some way.

Awareness? Awareness means slapping a multi-colored puzzle-design ribbon magnet on the back of the family minivan. Understanding means that when the minivan next to yours at the red light is moving back and forth propelled by the rocking of the teenager in the front seat, you notice but don’t judge. You might offer an understanding smile to the driver if the opportunity comes up. By refraining from negative comments, a parent provides a role model for the rest of the minivan passengers. Parents can take it to the next level by explaining to the others in the car pool why it’s so important to be supportive of others, neurotypical or autistic or with no label at all.

These days, with a dangerously unqualified Secretary of Education and a potential Supreme Court justice who has ruled against students with disabilities multiple times, awareness can go to…well, anyway, awareness is nowhere near enough. During this year’s Autism Awareness month, make a vow to move beyond awareness into the category of understanding – or better.

IDEA, the Individuals with Disabilities Education Act, is a law that guarantees disabled students a Free Appropriate Public Education. We knew that law inside and out by the time Amigo turned 21 and graduated from both our local public high school and the state school for the blind. Our state department of public instruction (Wisconsin DPI) and the federal department of education both had extensive information on the law.

On Wednesday, a search for information reached this message.

I tried again later. First, I found a page that suggested “Information about the regulations of the Individuals with Disabilities Education Act that was posted on this site has now been moved to a new location. To access this information and much more, please visit: http://idea.ed.gov.

On the idea dot ed dot gov, I found this message. The servers hosting our idea.ed.gov website are experiencing technical issues. We are working to resolve this issue, please check back later.

These two might be outdated, I thought. The first site references the year 2004, after all., the year of major updates to special education law. The links could be 12 years old.

I found an intact reference to FERPA, the Family Educational Rights and Privacy Act.

The link on the Department of Education page has a red box announcing “Disclaimer!” and leads not to an official page, but this one. It’s sponsored by a group called the Center for Parent Information and Resources. I’d have to look more closely at the organization before trusting their information.

This follows censorship (yes, censorship) of other government informational pages such as information about human causes of climate change. Some of Wisconsin’s “official” web sites have also pulled information that doesn’t jive with our governor’s narrow mind or that of his sponsors.

What’s going on? I’m not sure I want to know.

I know this much, though. We, the people, in order to maintain a flawed but functioning republic, will continue our quest for information. We’ll continue seeking information, and we’ll continue providing information. We’ll also continue verifying and confirming statements. For example: just because Ms. Conway makes a statement on camera three times doesn’t make it true (RIP, Bowling Green massacre victims).

In this case, out of sight (or out of website) doesn’t mean out of mind.

Chuck and I helped the local arts community by writing a column for the newspaper about Amigo and the barbershop chorus in which he sings. He enjoys rehearsals, thrives on the music, and gets totally psyched up for the performances. We were happy to support them with our column.

The piece apparently got picked up in a Madison newspaper. How do we know? Well, Chuck got a card from the guy who represents our district in the State Senate. We’ll call him Senator Throwback. The card enclosed a copy of our column, and carried a message that said “Saw this in the paper and thought you might like a copy.”

Nice, right? Maybe thoughtful? Politically expedient, too, eh? Almost. It’s likely that one of Senator Throwback’s staff pointed out the article and took the time to find our address, and on and on. We know that. But anyway, how did something that insignificant make the blog?

We co-wrote the article. Both of our names and both of our pictures accompanied the piece. We wrote it together. Senator Throwback addressed the article to Chuck and only Chuck. In his eyes, evidently I don’t exist.

Make no mistake, folks: this omission counts. By leaving one author, the female author, off the note, Senator Throwback made it clear that I do not exist for him. That’s too bad for him, though, because he’s forgotten one very important point: my vote counts exactly the same as Chuck’s does. And Senator Throwback isn’t likely to get mine next election.

The airwaves are full of debates and speaking events and predictions and (dare we say it) television commercials in the markets headed for primary caucuses and elections. There is one thing wrong with many of those TV ads. No, it’s not that they exist or that they’re misleading (although that can be true). I’m not even referring to the shady third party issue ads that crowd the screen all too often.

I’m talking about closed captioning.

The FCC has rules and guidelines for captioning of television shows, whether recorded ahead of time or aired live. Commercials, however, are still inconsistent. Some have captioning, some don’t. And many, all too many candidates bypass the time and the cost of captioning their commercials.

Think of those with hearing losses. Baby boomers raised on loud music, senior citizens with age-related hearing loss, millennials brought up on ear buds – all of these people are likely to miss the details in a well-made commercial. Then bring in those hearing problems not listed above — people with hearing aids or cochlear implants for whatever reason, from illness or hereditary conditions, from environmental problems like combat noise, among others. The size of the group grows.

Think about it. If you’re a candidate or working for a candidate, do you want to leave all of those voters out of your audience? That’s what happens if the ads aren’t captioned.

Closed captioning isn’t free. It costs money, and it costs time. However, paying the captioner and taking the time to load captions into an ad are investments. If those captions help a candidate to connect with voters, this additional cost of doing business can reach voters who may not have heard the candidate’s message – literally.

Readers, do you watch television with captioning on? Do you notice when a show or an ad has captioning – or doesn’t? I’d love to hear from you in the comments.